Tag: Rareillness

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.

It’s been a while since I teared up thinking about my health. I somehow don’t cry much about my health anymore. I realize I’m doing all I can and that’s enough for me to not feel like total shit about my health.

But today was different. It was random. Unexpected.

I just burst into tears on my uber ride back home from the hospital.I had a lot of thoughts running through my mind. And a pathetically sad song playing on my iPhone.

Now that I think about it, I know I just got overwhelmed looking at another bag full of medicines. A new set again, for these new symptoms which won’t go away. The medical bills. The time. The energy expenditure. The fatigue. The pain.

It can get to you at times. It really can.

It’s a constant dance between your present and future. Every choice, every decision matters. You wake up every day making a choice to get through the day. You go to bed knowing you’ve done your best, say a little thank you, and fall asleep. And sometimes you stay up because your body won’t let you sleep.

Don’t get me wrong. I’m not sharing this because I need pity (doesn’t help) and nor is it that I’m so devastated and can’t continue with life. I just wish to share two things –

1. Be grateful for your health if it’s still on your side. Not because it could be worse, but because you are okay today. In this very moment. Choose health, always.

2. It’s absolutely okay to cry. To feel like utter crap. To grieve over what’s gone. To worry, to feel upset, to feel annoyed or frustrated. It’s all okay. All normal. Let yourself have those emotions. Cry. Write. Yell. Speak with the ones who are on your side. Hug them. Whatever helps you process that emotion, do it. Then, once you’re better, remind yourself that you’ve got this. You’ve always done it right and you know what to do. Trust your body. No matter what comes. Honour your health. You’re on the same team.

It seems my previous blood test reflected that I am very low on Iron and Vitamin D so a Naturopath that I saw today for the first time has put me on prescribed supplements for the next couple of weeks. This includes a powdered Iron drink and a more potent form of vitamin D drops. I’ve been told that my low Iron could be adding to the brain fog and making exhaustion and fatigue from EDS even worse – possibly?

Over the next two weeks, I’ve also got to watch my unpredictable symptoms of IBS. It may all be pointing towards something more serious (or maybe not) and it’s better to have it checked. I’ve been given medication to help with severe bloating. I sometimes wish I could take some troublesome parts out of my body, send them for repair and assemble them back in place after sometime.

It’s been about 6 months now and I am always so full and have no appetite whatsoever. Yet, because my brain tells me that it makes no sense to go without food when I’m on that much medication, I force myself to eat. It’s also not as though I’m losing any weight. Instead, I’m only feeling heavy and full from very small portions. #chronicillnessissues

I’ll be going back to her in about two weeks and till then I have to follow what she’s told me to do. It’s going to be a step-wise process to figure out why my digestive system has been so wonky. It could be anything from SIBO to candida to a side-effect of taking all kinds of medication for the last 7 years. We don’t know yet. She also ordered for a blood-test to check on my thyroid, again, just to be on a safer side.

Honestly, she’s seemed like a very patient doctor and like most alternative or complementary medicine therapists/doctor, wanted to know every bit of my experience since my first major symptom back in 2009. I’m really hopeful about my treatment from her because my last visit to a Gastroenterologist left me thinking that there is no way forward without going in for a colonoscopy and gastroscopy. I wish it doesn’t get to any of it – one, because my body shows terrible side-effects to sedation and two, because I’m still in the process of figuring out my insurance and don’t want to be paying some $6,000 for these scopes just yet.

I had a really long day today and I haven’t yet fully recovered for yesterday’s brain fog.

Today has been a rough day. There is nothing worse than having a flare up during your monthly cycle. My back and tailbone are experiencing deadly spasms and the cramps this time are worse than last month. Monthly cycles don’t look the same like they did years back. EDS takes your ordinary monthly cycle issues to yet another level. Pain level just shoots up, your joints feel more loose than normal, (I’m excluding all the other common symptoms every woman deals with anyway) and getting out of bed is next to impossible. I’ve forgotten how to function today.

Despite all the mental strength and perseverance you’ve developed over the years, there will always be those days when you simply can’t function. You making a choice to get out of bed and get through your normal routine makes no difference to the fact that your brain has decided to shut down.

I would have liked to write more. I can’t think though and I might not make sense so I’m going to stop. Maybe tomorrow if I’m able to make sense of today myself. I got to go back to bed now. My phone feels heavier than normal and I can’t stand looking at my screen.

The memories I have of the times I could dance are nothing short of beautiful. Dance was something that filled me with pure ecstasy each and every single time performed, taught or just danced for myself. I used to sprain my ankles very often and required rest but I couldn’t resist dancing even during those times.

When life started looking different and I had to spend more and more time in bed, letting go of my passion for dance was one of the many painful decision I had to take. It used to hurt me each time I saw that those around me were able to dance and I couldn’t. It used to kill me each time I looked at old photographs and videos of myself dancing and I’d think to myself that life was becoming pointless – how is it that everything you love so deeply is harmful for you and your body in some way or the other? I’d wonder.

Then there came a point when I literally deprived myself of anything related to dance. No more old videos. No more old photographs. No more watching anyone else dance. No more listening to happy bollywood songs which drove me mad. No more talking about dance because each time I did, I’d have tears in my eyes. I thought I was helping myself get over my passion for dance by trying to forget everything related to it in my past. Which meant forgetting a BIG PART of my past and that was ridiculous.

Over last year or so, things started looking different. It was the year when I allowed myself to feel pain. I had to let myself grieve over what is no longer mine and what I had to leave behind, along with an older version of myself. Letting go wasn’t easy, because it wasn’t only dance I had to let go of. There was a list of all things that I loved and wanted and couldn’t have that I had to come to terms with. Till this point in time, I hadn’t let myself grieve that old version of me. The one I was so familiar with. I was only holding on. Not moving on. Soon, I began to ease into not being able to do certain things because I realized something very important – I started choosing health over everything else, and that is what made me come to terms with my present self. I don’t regret that I left dance but I know dance hasn’t left me. Dance will always be a part of me.

Though this process has been extremely uncomfortable, it has been absolutely worth it because I no longer look back at my photos and feel like shit. It doesn’t bring me to tears. When your story doesn’t make you cry, you know you have healed. Watching others dance doesn’t make me feel bad that I can’t. Instead, looking at people dance out of happiness and passion makes me insanely happy. And you know what? It makes me want to dance again sometimes. I can’t compare it to how things were and I won’t try because I understand the change my body has had to go through. I do what I can do and even that brings a smile on my face – even if it means just to dress up, blast music, move just a little bit and imagine as if I can dance like before. Dance involves both movement and expressions and even if EDS has taken away a decent amount of freedom of movement from me, it most definitely hasn’t taken away my ability to express/give expressions, or imagine and choreograph steps in my mind.

It’s true – once a dancer, always a dancer.

Today was one of those days when I let myself dance a little bit. Just a little bit. I was careful not to over do anything and it really required me to be aware and present. I think it’s okay to do what your soul craves sometimes as long as you have your next physiotherapy session booked. I do.

1) In March 2016, I took up a part-time job in order to do my part, to support myself (to the best of my ability) while other things fall into place. It was back in October 2015 when I made this decision, partly because the circumstances called for it and largely because I knew it would take me one step forward. I’m sharing this today because I’ve made it through 3 months and am still hopeful about continuing.

2) Before January of 2016, I had no clear idea on how insurance really worked. I was always curious and had many questions, though I never got a chance to find out more. Let’s just say, for reasons which can’t be stated. I had to take it for what it was until a day came when it was time to re-apply for an insurance. This time, considering the fact that I am ‘chronically sick’. Here I am today, figuring it all out by myself, going through all the application process and trying to prove, even though I have a big file full of reports and letters as evidence, that I need a good coverage.

3) I went through a much draining process of renewing my PR status and I’m so happy and relived to share that my #faith won over the negativity that was build around this whole topic. I’m extremely #grateful for the extended & renewed status and I’m also expecting a much greater change in the near future which could potentially open more doors for me.

4) While all this has been keeping me very busy and taking a huge chunk of my energy, I’ve been thoroughly enjoying putting together and conducting new classes. To be honest, I wish I could do even more and work towards my dreams of making a difference out there. The fact is, reality demands something else out of me right now & I can’t go any faster. It’s never a question about lack of creativity or determination; it’s about physical ability/limitations. I think there are many valid reasons to slow down but I don’t see a reason to stop.

5) And of course, I have been very committed towards my full-time job of self-care 💕

There’s so much I wish to write about each of these points… I’ll just leave it for some other time.

Thank you everyone! I truly appreciate all the love and kindness I’ve received from all of you. Thank you especially to those who called and messaged to check on me. I was in bed last night for three hours straight, icing my knee and releasing the tightness around it and just holding myself in place. I also manage to tape my knee up and put a guard on just to make sure it doesn’t shift in sleep. Got up this morning feeling super drained out, as if I ran a marathon last evening.

On a normal day, I’m already using a considerable amount of energy to hold myself up, given the nine degenerative and unstable joints I have. A small incident like last night’s requires even more out of me and my entire body. The good thing is that I am able to stand up and walk around today, albeit slower than usual and with a cane for support, but it is still manageable.

Thank goodness it’s nothing major and just seems like a slight amount of internal bruising. With EDS, it’s easy to hurt and bruise yourself as you can’t always gauge when what goes wrong. The impact does a lot more harm and you experience a significant amount of pain as compared to someone else in the same situation. As usual, one can’t always tell the effect on skin level, but turn out bodies inside out and you’ll see what a magnificent mess it can be :) Anyway, it’s a matter of a few days … lots of extra rest and care, usual pain management and being kind to my body and I will be up and about again.